PatientsLikeMe is a patient powered research network that improves lives and a real-time research platform that advances medicine.[1] On PatientsLikeMe’s network, people connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care.

Inspired by the life experiences of Stephen Heywood, PatientsLikeMe was founded in 2004 by his brothers Jamie and Ben Heywood and long-time family friend Jeff Cole. Stephen was diagnosed in 1998 at the age of 29 with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. As his illness progressed, Stephen's family made many attempts to slow his disease and treat his symptoms, but the trial-and-error approach was time-consuming and repetitive. They believed there had to be a better way.

They realised that Stephen’s experience was like that of millions of patients around the world who live with life-changing and chronic diseases. They often have specific questions about their treatment options, and about what to expect. They wonder - “Is what I’m experiencing normal?” or “Is there anyone out there like me?” The aim of PatientsLikeMe is to give people answers to those questions. The site helps them connect with others who know firsthand what they are going through. Members have reported their real-world experiences on more than 2,000 diseases, everything from rare diseases like ALS or idiopathic pulmonary fibrosis to more prevalent diseases like diabetes, depression, fibromyalgia, multiple sclerosis, and psoriasis. Through their health profile, members monitor their health between doctor or hospital visits, document the severity of their symptoms, identify triggers, note how they are responding to new treatments, and track side effects. They learn from the aggregated data of others with the same disease and see, often for the first time, just how they are really doing. They also get and give support from others that will help them live better day to day.[2]

PatientsLikeMe launched its first online community for ALS patients in 2006. From there, the company began adding communities for other life-changing conditions, including multiple sclerosis (MS), Parkinson's disease, fibromyalgia, HIV, chronic fatigue syndrome, mood disorders, epilepsy,[3]organ transplantation, progressive supranuclear palsy, multiple system atrophy, and Devic's disease (neuromyelitis optica). In April 2011, the company expanded its scope and opened its doors to any patient with any condition.[4] By April 2014, PatientsLikeMe had hit a new milestone of 250,000 members. Today the website covers more than 2,000 health conditions, with new members joining daily from the US and other countries around the world. Of note are the more than 6,500 ALS members, who have helped make PatientsLikeMe’s flagship community the largest online population of ALS patients in the world.[5] In the United States, approximately 10 percent of newly diagnosed ALS patients register on the site each month, and 2 percent of all multiple sclerosis patients in the country participate in the community.[6]

PatientsLikeMe allows members to input real-world data on their conditions, treatment history, side effects, hospitalizations, symptoms, disease-specific functional scores, weight, mood, quality of life and more on an ongoing basis. The result is a detailed longitudinal record – organized into charts and graphs – that allows patients to gain insight and identify patterns. The data-sharing platform is designed to help patients answer the following question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”.[7] Answers come in the form of shared longitudinal data from other patients with the same condition(s), thus allowing members to place their experiences in context and see what treatments have helped other patients like them.

On June 9, 2011, PatientsLikeMe announced [8] that it was releasing a tool which would show a list of trials from ClinicalTrials.gov to members of their system in the US, tailored to their condition and demographics. The list of available trials is refreshed each night from the open data from ClinicalTrials.gov, which is released in the public domain. Members of the site can search for trials for which they are eligible free of charge; the company also offers a commercial service to actively message potential participants for clinical trials.[9] In March 2013 the tool was upgraded to include trials for members in any country.[10]

PatientsLikeMe has an in-house team of research scientists. Since 2006, the PatientsLikeMe research team has authored more than forty peer-reviewed published scientific articles with over 700 citations.[11] In addition, PatientsLikeMe has been mentioned by others in more than 2,500 published scientific articles.[12]

In 2008, a small Italian study was published suggesting that lithium carbonate could slow the progression of ALS.[13] In response, hundreds of members of the site with the disease began taking the drug.[14] Using the self-reported data of 348 ALS patients and taking just nine months to complete, PatientsLikeMe conducted a study which demonstrated that lithium did not slow the progress of the disease.[15] The team suggested that online collection of patient self-report data was no substitute for randomized placebo-controlled trials, but it might be a useful new form of clinical research in certain circumstances.

In its "About Us" section, the company describes four core values:[16]

Honor the trust patients place in us - Patients trust the company to protect their private health data and to use it to advance knowledge of their disease.

Transparency - The company aims for “no surprises.” In an effort to ensure transparency, PatientsLikeMe discloses its business partnerships, what it does with patient data and how the company makes money.

Openness - The company believes that sharing health information openly has the potential to benefit patients.

Create “Wow” - This is the goal for what patients should feel when they visit PatientsLikeMe.com. Every sixth week, the engineering team holds a “Wow Week” to experiment and innovate freely in developing new site features, similar to Google's "20% time".

Describing itself “a for-profit company with a ‘not just for profit’ attitude,”[16] PatientsLikeMe does not allow advertising on its site. Instead, the company has based its business model around aligning patient interests with industry interests. Namely, this refers to the shared goals of accelerated clinical research, improved treatments and better patient care. To achieve these goals, PatientsLikeMe sells aggregated, de-identified data to its partners, including pharmaceutical companies and medical device makers. By selling the information that patients share about their conditions, PatientsLikeMe aims to help partners in the healthcare industry better understand the real-world experiences of patients as well as the real-world course of disease. Some of PatientsLikeMe’s past and present partners include UCB, Novartis, Sanofi, Avanir Pharmaceuticals and Acorda Therapeutics.[17]